When you parent a child with disabilities, things rarely surprise you, and we tend to just “roll with the punches,” in this proverbial boxing ring of life. But the events of the past few months took us by surprise. And now, we have a new diagnosis to process.
Epilepsy.
In late January, Mike and I were curled up on the couch watching our new favorite medical drama, The Pitt. This show is centered around doctors, nurses, and staff at an emergency room. Little did we know, we would be in the emergency room ourselves soon enough. Halfway through the show, we received a call from a very distraught care worker from Braden’s residential home.
“Braden had a seizure, and it was a bad one. The paramedics are here.”
What? A seizure? Braden has never had seizures. What is happening?
One of the paramedics got on the phone and told us that his seizure was three minutes long and they were taking him to the ER. “He is nonverbal,” Mike told them. “Please make sure his care worker goes with him.” They assured us he would be well taken care of.
The ER is about 30 minutes from our house, but only 10 from Braden’s, so we knew he would arrive before us. When we got there, his care worker was in the waiting room, not with Braden! We asked to go back, and they told us someone would come get us. After about 10 minutes, I went back to the desk, “Our son is nonverbal, autistic, and has an intellectual disability. Please let us go to him.” The attendant seemed surprised and ushered us right back. Of course, Braden was in a room, by HIMSELF. How terrifying that must have been for him. Why don’t people listen to parents? That’s a rant for another day.
Braden had tests done that evening and all came out okay. The ER doctor thought that perhaps he was dehydrated which could cause seizures. He said if he had another one in the next few days, to come back, but otherwise, he should be fine. Braden is on a strict hydration protocol due to his IBS (another diagnosis), so Mike and I were positive that this was not the case but had no other data to support him not having another seizure in the future. So, they discharged us and we went on our way.
Seizure #2
In February I came down with COVID, and it was rough. I hadn’t had it before and this took me down, so I isolated myself in our extra bedroom. One morning, Mike came barreling into the room and announced that Braden had another seizure and he was on his way to the ER. Heartbroken that I couldn’t go to Braden as well, I asked Mike to keep me updated.
Mike arrived and Braden was in the waiting room as all the beds in the ER were taken. This seizure was four minutes long and two care workers supported him through it. Braden was exhausted, but kept telling Mike, “Yeah.” When he says this, it means he is trying to tell us something but doesn’t have the words to do so. Braden looked at his arm.
Text to me:
Mike: “Braden can’t move his left arm.”
Me: “What does that mean? Did he have a stroke?”
While I was in my isolation room panicking, Mike told the front desk people about this finding. Soon, Braden was taken in for an X-ray. Results: During the seizure, he had dislocated his shoulder.
No stroke, phew. But..OUCH!
Braden finally got into the ER. They had to administer Propofol to put him in a relaxed state so they could put his shoulder back into place. It took five people, and Mike said watching that was horrific.
While in the ER, Braden’s heart rate was extremely low, but if he got up at all, it would skyrocket. Mike kept asking about that, but the ER team assured him it was normal. But something told Mike this just wasn’t the case.
Hours went by with tests and more tests, a call to the neurologist in town who specializes in seizures, a new medication to stop the seizures administered, and then the final thing- an x-ray to ensure his shoulder was, indeed, back in place. Almost home…
But no such luck, as the edges of the x-ray showed something on Braden’s lung. So, they then x-rayed his lungs and it was pneumonia. Say what? He wasn’t even sick. We would have noticed if he had pneumonia. But this, my friends, was the cause of his heart rate fluctuations. So, Braden was then admitted to the hospital as they feared another seizure and wanted to monitor the pneumonia.
The pneumonia, it turns out, was the result of Braden aspirating during his seizure. The care worker told the ER he thought Braden aspirated, but I guess that wasn’t written down anywhere and not followed up on. Sigh. So again I ask, why don’t they listen to us? We did mention multiple times at the outset that aspiration occurred.
We are thankful Braden was admitted, as he needed an MRI, which is next to impossible to get here in Bend. As it stood, we couldn’t get in to see the neurologist until the end of March. There was no way to ensure Braden stayed still during the MRI, so they had to sedate him. Braden got the MRI and was in recovery. The nurse then told Mike that it was taking Braden too long to come out of the anesthesia.
Mike: “Braden’s not coming out of the anesthesia. They are worried.”
Me: “Shit.”
Mike: “She said it’s taking way too long. I’m freaking out.”
Then…nothing. I couldn’t get hold of Mike. I called, I texted. Nothing. His phone was not picking up a signal back in the recovery room.
Madi called and we kept each other talking and tried to tell funny stories to stop our minds from going to the worst-case scenario.
Then, finally, we got this text:
“He woke up! Sorry, I was in a space with no reception as we transferred Braden back to his room.”
Madi and I both cried tears of relief.
I won’t go into more details of the hospital stay. Braden was finally released, on a new medication, with orders to not ski, bike, or do any exercise he loves, and with hopes he wouldn’t have any more seizures.
This past week, we met with the neurologist. We’ve had some incredible doctors who have worked with Braden through the years, and we’ve had some real duds. Luckily, this doctor is a gem! He spent so much time with us and explained everything to us.
- Braden has epilepsy
- His seizures are called tonic-clonic seizures (formerly known as grand mal) as they affect the entire brain
- They are common in individuals with developmental delay and autism
- Dislocated shoulders are also a common outcome of these seizures
- MRI findings showed that Braden has a malformation of cortical development, which is a structural anomaly that disrupts the normal process of cortical development, often leading to seizures, developmental delay, and cognitive impairment. They are caused by abnormalities in cell proliferation, migration, or organization during fetal brain development.
- Interestingly, he could tell by looking at the MRI, that this malformation is not the cause of Braden’s disabilities, but is the cause of his seizures.
So, a new year brings a new diagnosis. Our family continues to “roll with the punches,” but honestly, it would be nice if we could step out of the ring for a while.
